Should I Still Call It Celiac Anyway?

[Harpgirl]

Okay, so my blood work came back negative for celiac, and because I respond so well to the gluten-free diet, my GI dr wants to diagnose me as gluten sensitive (just like he wanted to diagnose me with IBS before I requested the test ). I'm still firmly convinced that the test result is false because...

1. I had to request it myself so I have little faith in how often my dr. or his lab sees the test to have the experience to run it correctly.

2. My grandmother was positively diagnosed with celiac.

3. All my symptoms fit and are being relieved by a gluten-free diet.

So my question is, because I'm officially diagnosed gluten intolerant, do others (i.e. restaurants, family, friends) in general respond more seriously if you tell them your gluten intolerant, or that you have celiac disease?

[kareng]

Okay, so my blood work came back negative for celiac, and because I respond so well to the gluten-free diet, my GI dr wants to diagnose me as gluten sensitive (just like he wanted to diagnose me with IBS before I requested the test ). I'm still firmly convinced that the test result is false because...

1. I had to request it myself so I have little faith in how often my dr. or his lab sees the test to have the experience to run it correctly.

2. My grandmother was positively diagnosed with celiac.

3. All my symptoms fit and are being relieved by a gluten-free diet.

So my question is, because I'm officially diagnosed gluten intolerant, do others (i.e. restaurants, family, friends) in general respond more seriously if you tell them your gluten intolerant, or that you have celiac disease?

Tell them Celiac Disease. And if they don't understand, tell them wheat allergy. I know Wendy's workers understand allergy. You really don't have to explain the whole medical history to anyone but us.

[GlutenFreeManna]

I have no test results except dietary response, but I tell friends and family it's celiac disease. My family still doesn't take it completely serious but most of them respect my wishes to not eat food they prepare. I have met many people who know what gluten-free is but they think I might cheat or just be doing this as a fad diet until I tell them it's celiac and it's an autoimmune disease not just an "allergy". Most people don't care to know how I was diagnosed unless they think they have it too. When I'm ordering food I will just tell people wheat allergy (which I DO have postive test results for that so I'm not lying) or that I need it to be gluten-free and "I'm very sensitive so please be careful".

[Jestgar]

Say whatever works. Some people understand celiac disease, others, allergy, others "gluten issues".

[melikamaui]

Okay, so my blood work came back negative for celiac, and because I respond so well to the gluten-free diet, my GI dr wants to diagnose me as gluten sensitive (just like he wanted to diagnose me with IBS before I requested the test ). I'm still firmly convinced that the test result is false because...

1. I had to request it myself so I have little faith in how often my dr. or his lab sees the test to have the experience to run it correctly.

2. My grandmother was positively diagnosed with celiac.

3. All my symptoms fit and are being relieved by a gluten-free diet.

So my question is, because I'm officially diagnosed gluten intolerant, do others (i.e. restaurants, family, friends) in general respond more seriously if you tell them your gluten intolerant, or that you have celiac disease?

I think either way you're fine. Gluten intolerance is very serious. I think people tend to hear the word "disease" and take it more seriously, but gluten intolerance is serious as well. My first test results came back negative, but my son has celiac disease. I have been referring to myself as "gluten intolerant" while explaining to people that my son has celiac disease. I'm actually testing again because I find it hard to believe that he has celiac disease, and I don't. I guess I don't fully understand how genetics come into play with celiac disease and gluten intolerance yet. Have you read "Cereal Killers"? In that book the authors talk about "The Gluten Syndrome" and hope to change the name of ALL gluten related problems to this one umbrella category. I think that's a really good idea.

[Katrala]

In that book the authors talk about "The Gluten Syndrome" and hope to change the name of ALL gluten related problems to this one umbrella category. I think that's a really good idea.

The problem with labeling it all under one umbrella is that these are different disorders that just so happen to share some common symptoms and a common solution.

However, people with Celiac Disease need to be monitored for other conditions, due to the absorption of nutrients, while people who are gluten intolerant and/or sensitive don't have the same risks.

While society may stereotype one or the other in a certain way, both are serious and should be handled as such.

Personally, I'd much rather be gluten intolerant / sensitive than have Celiac, but that's just because I worry about long term problems since I had health problems that ended with my diagnosis. However, I also don't have the extreme GI symptoms that many gluten intolerant / sensitive people do, and I'm thankful for that.

[Katrala]

1. I had to request it myself so I have little faith in how often my dr. or his lab sees the test to have the experience to run it correctly.

Most likely, your doctor's office isn't the place that actually ran your test. While they draw the blood, they will send the blood somewhere else for a celiac panel.

[Skylark]

Say whatever works. Some people understand celiac disease, others, allergy, others "gluten issues".

Yep. And simplest of all is "wheat makes me really sick".

[ravenwoodglass]

The problem with labeling it all under one umbrella is that these are different disorders that just so happen to share some common symptoms and a common solution.

However, people with Celiac Disease need to be monitored for other conditions, due to the absorption of nutrients, while people who are gluten intolerant and/or sensitive don't have the same risks.

While society may stereotype one or the other in a certain way, both are serious and should be handled as such.

Personally, I'd much rather be gluten intolerant / sensitive than have Celiac, but that's just because I worry about long term problems since I had health problems that ended with my diagnosis. However, I also don't have the extreme GI symptoms that many gluten intolerant / sensitive people do, and I'm thankful for that.

I don't think I agree with you that "people with Celiac Disease need to be monitored for other conditions, due to the absorption of nutrients, while people who are gluten intolerant and/or sensitive don't have the same risks." Although my doctors have diagnosed me as celiac I am a sero-negative celiac so many doctors would give me a 'gluten intolerant' label instead. I consider them to be the same disorder but with different body systems being affected more severely. The reason is that both are autoimmune and both cause reactions from gluten injestion caused antibodies. Celiac disease can cause antibody attacks on the brain and other organs before gut symptoms become severe and those folks will sometimes be the ones labeled as gluten intolerant. Both those labeled gluten intolerant and those labeled celiac need to just as strict and they both need to be monitored for the development of other autoimmune conditions although I think the chances of other conditions developing becomes less the longer we are strictly gluten free.

[Katrala]

Both those labeled gluten intolerant and those labeled celiac need to just as strict and they both need to be monitored for the development of other autoimmune conditions although I think the chances of other conditions developing becomes less the longer we are strictly gluten free.

I'm referring to conditions that result from the malabsorption of nutrients due to the lining of the small intestine.

It seems like there is some sort of competition for a label - I have no idea why, though.

While I agree to say whatever works to make people understand what you can/can't eat, IMO medically they aren't the same thing.

[Skylark]

It seems like there is some sort of competition for a label - I have no idea why, though.

It's pretty basic psychology. We use labels to answer the question "who am I?" Labels offer recognition, legitimacy, and a sense of belonging to a similarly-labeled community. You have all sorts of labels for yourself, whether or not you are aware of them, becasue a sense of belonging is a very basic human need. Family surnames, job titles, hobby titles (dog breeder, gardener, mechanic, etc.), nationality, family roles like parent or grandparent, etc. The celiac label makes a person's struggles "official" and somehow more tangible. Taking a label that isn't correct often leads to social rejection, causing some people to go to extremes to get proof that they are celiac.

If non-celiac gluten intolerance ever gets national media coverage and gains legitimacy, it will become an acceptable label and we won't see as many of these threads.

[melikamaui]

The problem with labeling it all under one umbrella is that these are different disorders that just so happen to share some common symptoms and a common solution.

However, people with Celiac Disease need to be monitored for other conditions, due to the absorption of nutrients, while people who are gluten intolerant and/or sensitive don't have the same risks.

While society may stereotype one or the other in a certain way, both are serious and should be handled as such.

Personally, I'd much rather be gluten intolerant / sensitive than have Celiac, but that's just because I worry about long term problems since I had health problems that ended with my diagnosis. However, I also don't have the extreme GI symptoms that many gluten intolerant / sensitive people do, and I'm thankful for that.

I agree with you. My son has celiac disease and I know he has a much harder road ahead of him because of that. However, I think for the general public an umbrella term would be helpful. I have friends who suddenly became terrified of hurting my son because of his diagnosis. Sometimes I think the word "disease" really scares people. A blanket term like "gluten syndrome" is less scary for some but still denotes something serious.

[beachbirdie]

I agree with you. My son has celiac disease and I know he has a much harder road ahead of him because of that. However, I think for the general public an umbrella term would be helpful. I have friends who suddenly became terrified of hurting my son because of his diagnosis. Sometimes I think the word "disease" really scares people. A blanket term like "gluten syndrome" is less scary for some but still denotes something serious.

Makes sense. I like the idea of "gluten syndrome" or something like that. If I think about "thyroid disease", it covers a lot of territory! You can have autoimmune thyroid disease (like Graves or Hashimoto's), you can have different types of thyroid cancer, you can have idiopathic low or high thyroid, even thyroid problems that are not because the thyroid is diseased, but because the pituitary is problematic. All falls under the "thyroid" category.

Most people we would want to alert about our conditions don't need to know the biological details, just something that they can relate to comfortably.

[gailc]

It seems like there is some sort of competition for a label - I have no idea why, though.

----------------

without the label you might not be getting proper treatment. Some doctors don't want you on a gluten free diet unless Celiac. I call that irresponsible, what happened to "first do no harm"? Also if labeled Celiac they may do some tests more often.

gailc

[Jenniferxgfx]

I Think it depends on who you talk to. Some folks don't know what either means, and some don't think celiac disease is that serious anyway.

I'm sure I have celiac, but I have been just saying "I can't eat wheat" and leave it at that.

I disagree with the comment that nonceliacs don't need to be monitored for long-term health outcomes, since false negatives are common and there's no way to be 100% sure a gluten intolerant person is not celiac.

[mommida]

Well I have some concerns as to not finding the medical reason gluten consumption is making you feel so sick.

For example... My daughter has Eosinophilic Esophagitus. It has "trigger" foods or airborn "triggers". Gluten can be the "trigger" for some affected individuals. Eosinophils can be in any part of the GI track and now they are "lumping" all the disorders together.

I think there are more illnesses/disorders that are tied to gluten other than Celiac, DH, gluten intolerance, and Eosinophilic. We have research that shows a gluten free diet is helpful for auto-immune diseases, MS, and mental disorders.

[GlutenFreeManna]

Well I have some concerns as to not finding the medical reason gluten consumption is making you feel so sick.

For example... My daughter has Eosinophilic Esophagitus. It has "trigger" foods or airborn "triggers". Gluten can be the "trigger" for some affected individuals. Eosinophils can be in any part of the GI track and now they are "lumping" all the disorders together.

I think there are more illnesses/disorders that are tied to gluten other than Celiac, DH, gluten intolerance, and Eosinophilic. We have research that shows a gluten free diet is helpful for auto-immune diseases, MS, and mental disorders.

I agree with you that many other things respond to a gluten-free diet, but the difference is that if she has another autoimmune disease or something it can be tested for while off gluten and treated while off gluten. Many people have celiac AND another autoimmune disease or another health issue. The OP was not asking what to tell her future DRs or people treating her medically (they have already labeled her GI anyway). She was asking if it's okay to tell her family and friends that it's celiac. Since she has a family history of celiac and symptoms relieved by the gluten-free diet there is no harm in calling it celiac. It very likely IS celiac in an early stage. I think they don't yet know enough about the progression of celiac and the testing is not good enough to pick it up in the early stages (and for some people the tests never pick it up for some reason). Wouldn't it be great if in the future the tests are more precise and they can say "you have celiac stage X, this category" or something. Even in that day however people in your personal life probably won't care about the specifics of your diagnosis.

[mommida]

I thought other posters had it right in the responses. Call it Celiac/ allergy/ or whatever seems to ring a bell for people that you aren't eating gluten for health reasons.

I don't want someone to stop looking for answers to WHY gluten is making them sick. If gluten excerbates medical conditions, there could be a serious illness that can only be helped if it is diagnosed.